Tuesday, March 01, 2016

I haven't written here in a long time, but I want a place where I can share this less publicly than in a Facebook note, and let a few friends know it is available.

Starting in September I was braced, feeling John
could die at any time, but he continued to decline slowly.I read a lot about death over the last year,
and it led me to wish very much to be able to talk to him about our years
together and have some closure.He didn’t want to talk about anything
that seemed like a recognition of death, but we did have one conversation in
December with the help of his friend Debra.He understood more that I had tried to help him grow with me, and I
understood more that it had broken his heart when I healed from childhood
trauma because I no longer needed him in the ways I had.

John with his Aunt Florence (age 104) December 2015

John was getting thinner in January and early
February, but the main way that he was losing more quality of life was that none
of us could understand more than a few words of his speech, even with the
amplifier I had bought him. He had a bed
sore that wasn’t getting better, but he wasn’t in pain.Our daughter Elizabeth visited for a week in early
February and then went back up to Boston in time to spend Valentine’s weekend
with her boyfriend.

On Feb. 14, I was planning to go to a dinner at the
Rensing Center after Peace Church, and I had a cheesecake in the back of my car
for that dinner (using up leftover ingredients that Elizabeth had bought).But when church was over I found a message on
my phone from John, just silence, and also a message from his friend Peter Sparks, whom
John had called but Peter hadn’t been able to understand him.I called the nurse’s desk and they said John
was ok, no change.But I was concerned
enough to decide to stop and see him anyway.

He told me that evening that he had decided to
stop eating and drinking and stop all medication except for sleep (and for pain
if needed, but he wasn’t in pain).His
explanation was in the form of several stories about how the care had not been
as good at Clemson Downs since they expanded.There were times when the nurses had been impatient with him or tried to
pressure him to have his pills crushed, which he didn’t want.It was very important to him for me to know
all this; I think he needed a reason and wanted some good to come out of his death that way.He seemed a little scared; I think he thought
he would die soon.I told him that it
would be three to five days (that was my incorrect memory of what I had read—it can be 5 days to two weeks).At that
point he wanted it to be over as soon as possible.I got him some ice chips, which he liked.

I wasn’t sure whether his decision of that evening
would hold, but when I went back Monday afternoon after my classes he was
taking only ice chips.He was peaceful,
in no pain.I called his oldest friends,
and one, Mary Lou, said she would come from Florida to be with him the next
day.Elizabeth was uncertain about what
to do but decided to come Wednesday.Mary Lou arrived on Tuesday and she and I struggled to understand
something he wanted to say Tuesday evening.We first figured out it was about a party, and then to our surprise
realized he was saying he wanted to have a goodbye party that he could be at,
that weekend.His friend Cynthia went
forward with organizing a party with the Drinking Liberals and his movie group
for Friday, but there were some people who couldn’t come Friday so I organized
a second party for Saturday.

When I was with John he wanted me to tell people
his decision and tell him stories of our earlier days. I did not feel that he gave me a blessing, but he did want my care again. Pastor Bruce from Peace Church visited
several times and John said yes to prayer and anointing. The hospice chaplain sang for us with his guitar.

Elizabeth arrived on Wednesday, and her first
priority was a Skype conversation on my iPad so that her boyfriend AJ could
speak to John.AJ asked John’s blessing
to marry his daughter.John couldn’t say
anything understandable by that point, but he smiled.We used that picture on the invitation to
Saturday’s party, which went out to everyone at Peace Church and his wine
friends and on Facebook.

People who saw John Thursday commented on how much
more peaceful he was than the week before, though he tried to say a few things
that we had great trouble understanding. He was able to nod and shake his head
and was clear he was not in pain.I
called several of his old friends and held the phone to his ear so they could
speak to him.Nurses had very different
ideas whether he would live only a few days or a week or more.

I had gone to the local funeral home to talk to
them about alternatives, as John preferred not to be cremated but I was worried
that burial in Massachusetts in February would be impractical. The costs
were indeed unreasonable, and so Elizabeth and I had talked with Bruce about
whether or not to discuss the issue with John.We came up with the idea of asking him which wine bottle he would like
his ashes to be buried in, but by the time we brought the bottles in on Friday he
was so much less aware that we did not ask.

On Friday he was much weaker.In the afternoon I thought he was napping,
but eventually I realized that he had woken up and was hearing but with his
eyes almost closed.I sat with him and
held his hand.Our son Paul arrived and told
John that he loved him and thanked John for all he had done to support him, and
John smiled at him.We put John in the
reclining wheelchair and took him into the common room for the party Friday
evening.His eyes were mostly closed but
we could see a small smile as people told stories about him, which varied from
how much they admired him to jokes about John meeting Scalia at the Pearly
Gates.

I had brought clothes thinking I might spend the
night in John’s room, but I was so tired after the party and he had so clearly
been aware of what was going on that I decided to go home.He took his sleep medicine, though he
struggled to swallow it.I told the nurse to
call me if his breathing changed.

At 4:30 am Saturday morning Feb. 20, I got a call that John
had died.I asked if they had notified
hospice and the brain donation people, and I was told they knew I wanted to be
there so they called me first to give me a head start.I woke Paul and Elizabeth, and Paul said he
wanted to go.When we got there John was
still completely warm.I emailed his
friend Cynthia, who gets up very early, and she came over.I called Pastor Bruce but he didn’t get the
message for about an hour.Elizabeth
called to say she had decided she did want to come, so Paul went home and she
came.I made up a little ritual saying
goodbye to John’s body and then Elizabeth and Cynthia left the room and the
hospice nurse and I wrapped John’s body.He didn’t need cleaning, so I simply swaddled him in a soft sheet over
his clothes.

We then left the room so the hospice nurse could
wrap his head in ice.Pastor Bruce
arrived and we sat in the common room waiting for the brain donation
transport.When they arrived they put
him in a body bag and Bruce and I and Cynthia walked behind the stretcher
following him until he was loaded into the transport vehicle.

Elizabeth and I went out to breakfast because I
knew that I needed to not get too low blood sugar, and then we called people
and also got out word that the Saturday party was moved to my house.The main snag was reaching someone at the
Cremation Society of South Carolina, but when I finally did, I was content with
the conversation.The body had been
taken to Charleston for the brain donation, so they just had to make the arrangements
to receive it when it was transported back. I had realized after talking with the local funeral home that I didn't need a funeral home to do anything but the cremation, and the Cremation Society was less than half the cost of cremation at a full service funeral home.

At least 30 people came to the party Saturday
night, bringing food, and we felt very surrounded by community.Elizabeth had found pictures of John and put
them up all around the living room.I
kept saying that John’s death had been so peaceful and we had had such a good
chance to say goodbye that most of all I felt grateful. I did not get to say goodbye to my father who
died in a car accident when I was small or to the stepfather who raised me, who
died while traveling, so it meant very much to have had a peaceful goodbye.

The next day Elizabeth and I went to church at
Holy Trinity in the morning and felt embraced by community again. We worked
particularly that afternoon on an obituary to share, with a much shorter form
for the newspaper.At Peace Church that
evening there was a same-sex wedding as part of the regular Sunday service so
the congregation could be family to two young men who had been rejected by
their families.Elizabeth was happy to
be their photographer.

Monday we started emptying his room at the nursing home and met with the funeral director at the
Cremation Society to start the planning.We had already penciled in Saturday morning for the memorial service so
that Paul and AJ could get there more easily.Tuesday we met with Pastor Bruce and roughed out the service, with
Elizabeth clearly wanting many Episcopal words, which felt like familiar, comforting
ritual to her.We decided to sing Swing
Low Sweet Chariot because John sang it as a lullaby to the kids and Joyful,
Joyful because we sang it at our wedding.I normally print the bulletin for Peace Church, so we did the final design
later in the week and printed it on Thursday.We also decided to do our own flowers, with the initial idea that we
wanted masses of daffodils we could get at Trader Joes.When I called Trader Joes early in the week
they were out, but when we went there on Friday they had them.

The funeral home had not wanted to promise for sure to have
the ashes before the service because the paperwork can be slow, and they hadn’t called by Friday morning, but
when we went by we were able to pick them up.Elizabeth and I drove to Charlotte to pick up AJ and then got some
takeout dinner to share with some family who came into town by dinner time—my
aunt from Washington DC and her son and wife who drove her down.They supported us while we faced putting the
ashes into the wine bottle (which fit less than half).

Saturday Feb. 27 we went to the church early to decorate
the altar.Bruce had suggested glasses
with the bottle, and Elizabeth had found a table runner woven by John’s
grandmother that fit the altar like it was made for it.We had bought both daffodils and Japanese
iris, another favorite of John’s.We put
the irises in the vase John had given me as an engagement present.

My youngest sister had come in from California
late Friday night and stayed at our house and helped us in the morning.My middle sister and her husband and kids
were with my mother in Florida, and our rich Florida relatives had arranged for
a Lear jet to fly them from Florida to the Clemson/Oconee County airport.They arrived at the church about 9:30.

Elizabeth did a reading during the service, but
other than that it was Pastor Bruce doing it all; I hadn’t wanted
eulogies.He read the obituary and
talked about how he had known John in his last days.There were about 90 people there—we had
realized over the previous week how large our community was and were somewhat
expecting that.

There was a reception at
the church and then a lunch at the house for family and closer friends, all
with food people had brought. One of my sisters had suggested that my mother could pay for catering but I said no, you don't understand the south, people will want to bring food. I didn't even organize that part, a friend from church did. We felt so supported by so many different communities.

My family left around 3 and Paul and Elizabeth and
AJ and I took a walk in the botanical garden and I napped a little.On Sunday I drove Elizabeth and AJ to
Charlotte to fly back to Boston.I was
so happy we had done so much of the planning and organizing the funeral
ourselves; it felt like a concrete saying goodbye and just the right amount of
time focused on that before I started back to work the next Monday.